harpazo_hope

$1500 This was going to be my last resort... I understand with all the legal crap going on, but still...

I have Lyme, and have these symptoms except I haven't had the change in eyesight measured because it wasn't severe. I've also had double vision when looking at near objects... and believe it is all neurological and involving the ocular nerve... I read about it anyway but can't remember a thing.

I just hope that the Lyme board doesn't center around brain fog and anxiety as the only neurological symptoms of lyme, like all the other lyme boards and groups I've read.

Yes, he tested positive for Lyme disease, but hasn't been tested since the first time. His LD symptoms remain... I don't know what the a cunningham test or a dan are. I haven't tried glycine or nac, but taurine made him vomit blood. I've considered ivig, but don't want the stress of dealing with insurance on top of everything else, and I don't know what pex is. The three week cycle is probably related to Lyme which has a usual four week cycle. I guess I will be searching these things out soon... I've kind of reached a stage where I am so utterly overwhelmed, I just want someone else to take over and help my son be well again.

My son has been on many different antibiotics for over a year for Lyme disease and antifungals for the same period of time. We've also tried parasite herbal formulas, rife machine, cat's claw, GABA, a ton of other supplements over a year ago for the Tourette's syndrome part of it, different diets, and I'm positive I'm forgetting things. He hasn't changed much since I last posted... he has regressive behavior and speech, OCD now and anxiety, motor and vocal tics, and another list of physical ailments... all of which fluctuate over about a three week period.

My son is still not well. I took him to an acupuncturist who suggested I check into the work of Dr. Amy Yasko - http://www.dramyyasko.com/. Has anyone tried her approach with PANDAS/PITANDS? I'm feeling desperate, and that scares me because I am so vulnerable. I would like to hear stories of PANDAS/PITANDS/Lyme disease kids going through this program.

I think you have to be off of them for 2 weeks, but I might have that wrong.

My son gets this too. He used to get what I thought were absence seizures, and his eyes looked the same. A family member saw my son talking strangely with his eyes looking like this and she thought he looked like he was on drugs.

Hmmm....just like PANDAS! well, except for the part about being recognized by many docs... Chronic Lyme disease does not exist according to authorities. Neurological Lyme does not happen in children according to these same experts. Everyone outside of Connecticut is told Lyme doesn't exist in their state (exaggerated but close.) The official IDSA guidelines for treating Lyme disease DON'T WORK if you have been infected longer than (a few weeks?) You still get condescending smirks from local doctors when it is mentioned... And the list goes on and on... So PANDAS and Lyme kid parents are in the same boat of having a hard time finding a doc to treat.

May is Lyme disease awareness month and they are offering 2 for 1 in honor of that for $34.95. http://www.underourskin.com/store_home.html

My sister bought it for me when it was a pre-release or something. She borrowed it though and hasn't returned it. It is very good, and the book Cure Unknown is a must read. I remember that in June they were stopping sales on the documentary until the final product was out on the market. Maybe that is why it is expensive. I would hold out until then and check out the Under Our Skin website for news.

Hi... I haven't read through your whole post very thoroughly nor the replies to it... sorry! I'm out of it this morning. I just picked up on your symptoms worsening with an accident. This happens a lot in Lyme disease. After surgery or a serious accident symptoms emerge in a once quiet infection. That's what happened to me with a c-section I think. You might want to look into Lyme disease also. I hope you find your answers! http://www.ilads.org/lyme_disease/about_lyme.html

Here is a link on the western blot test. I would DEFINITELY consider lyme if band 66 came up. I would consider it if NO bands came up because often the most ill of lyme patients test negative. http://flash.lymenet.org/scripts/ultimateb...i/topic/1/42077? The GDU came from a company called Daniel Chapter 1 or 11 or 7 or something with an odd number... lol. Back to edit this again. I too am confused... is it Lyme or could it be another infection. That's where the PITANDS name comes in I guess... I don't care what is causing it. I just want to find out WHAT and have our kids better.

And to me also!

Her test for Lyme was neg. I will def try the magnesium and epsom salt! We massage and place the heat pads with meds and have changed pillows. She has bad headaches right now too but this has been one of her symptoms all along. As far as the deep breathing--she would love that! Waiting IVIG and she said the first thing she wants to do when sneezing stops is take a deep breath in and let a deep breath out Not to drag it on, but did you see her western blot? Did she have *any* bands show up? A negative test means nothing and Lyme is a clinical diagnosis... but you're her mom with those mother's instincts that I would trust. My stiff neck was helped by a product called GDU... it had enzymes, turmeric, and some other anti-inflammatory herbs.

Stiff neck and shoulders is very common with Lyme disease.

Thanks... I do believe he has Lyme... congenital lyme to be exact, and my doctor is treating him as though he does have lyme. My doctor is inexperienced, but he is the only MD in my state that will treat lyme. There are naturopaths and others that my insurance do not cover. I think I am going to ask him to call the famous lyme pediatrician out East. I heard he will consult with doctors over the phone. Thanks for caring. I had to come back with the band thing... It's so hard to be telling people we have Lyme when technically our western blots have been negative, and our doctor has never diagnosed my son with Lyme. I have been because I had a positive screening test.

Amen! I am not in a hurry to have him medicated. I am even leery of behavioral therapy... I guess I should do more reading on that. But as for meds... how can I find the cause if we are masking the symptoms? I'm sorry you had to deal with bully doctors. I've dealt with that too, and it's hard. After talking to the ER doctor this morning, I am not too worried that they will be pushing for meds. My son was well (and still is 7 hours later!!! :-) when he called, and he mentioned maybe not needing a psychiatrist just yet, but that he should be evaluated. I don't know what to blame. Maybe he has PANDAS too? Yeast? His doctor does think he probably has Lyme, but his western blot was one band short of being CDC positive. Whatever I might think it is, the ER doctors aren't going to buy it. As for yeast, he has only seriously had reactions to diflucan. He doesn't herx when we switch antibiotics like I do.

have you checked into yeast being the culprit for the baby talk/toddler behavior. when my son first presented it was with yeast behaviors. if he's been on abx for a while, it could be a possibility. I have thought of that. He had been on diflucan for many months, but has been off of them the last two months with continued antibiotics. This would be the only major change in his treatment.

Thanks for bringing up the TV too. I had a hunch I should limit video games. The boys have been playing a lot of Guitar hero...so it's been turned off for a while. Now we're going for a walk. It's been 2 hours of having my normal boy back. I 'm hoping he stays.

My guess would be they would start with an SSRI. Then likely respirdal. Was it a migraine type thing? Sounds a lot like one. I've noticed that a lot of the kids with PANDAS have migraine type incidents. DS used to have them frequently. When we starting the magnesium supplements and cut out foods known to trigger migraines (for him it was nitrates in food like bacon & salami, others are cheese, & chocolate) they went away. We also realized that too much TV and high action movies (especially in the theater) were triggers for him too. The only one he's had in almost a year was after seeing Avatar in 3D. A lot of times the meds they use don't work well with PANDAS kids. We started with Zoloft before we knew it was PANDAS and a very very small dose does seem to help DS, but the "therapeutic dose" made him so much worse. More tics, manic, couldn't sleep, weight gain, all sorts of problems. And then weaning him off has been an ordeal in itself. The anti-biotics DS has been on the past 3 months have done more for him than we saw the whole year he was taking Zoloft. Improved mood, lowered anxiety, coping skills, flexibility, better relationship skills, more focus. But we did try 3 before finding one that worked well. And the Bontech supplements do help DS's tics, though they don't go away completely. What drives me crazy about the medical field right now is that they still separate mental from physical symptoms. Your brain is an organ in your body. Problems in your brain ARE PHYSICAL. If your brain is sick it will affect they way you think. The baby talk is not an unusual PANDAS symptom. My son did that with his most recent exacerbation in February. Age regression is typical of PANDAS, which is a physical illness. I'm a fan of therapy because our kids need all the tools they can get, but psychiatric drugs will not cure PANDAS. After reading Against Medical Advice I decided that we weren't going to start mixing up chemical cocktails for DS. The side effects are as bad as the problems for most people! Thanks... I don't know what kind of headache...but he also had a stomach ache which often accompanies migraines. I hear you on the mental/physical thing. I don't know how they can draw the line between psychological and neurological only by the LACK of evidence. They can't test for it so it must be psychological... *sigh* It makes me so mad that something can be "typical" and they don't know about it.

Thank you very much for your calm reply. I have the same thoughts on the matter but in a more upset and anxious or maybe even angry voice. My doctor is aware of PANDAS. We usually talk about Lyme on our visits though... My son has been on antibiotics for almost a year because he was only one band shy of being CDC positive on his Lyme test... so I guess my son has been treated for PITANDS then? When I called my doctor about the hallucinations and increase in other symptoms, he said that he believes that something is causing it and that he would like to give it time to find out what it is before putting him on meds. He doesn't want to give up on him yet. But, he did mention seeing a psychiatrist, but I know he's on my side on this one. It's the ER doctor that I am concerned about. I feel it may be exactly as you say, that I must prove myself a fit parent. On a brighter side, This morning I have my regular boy back acting his age and feeling well. He said that maybe the dizziness and headaches were just him leaving dream land. I hope so. He also fell asleep in the dark without anxiety attacks.

I took my son to the emergency room last night. He was extremely dizzy, had a headache and felt like he had a fever. With all the behavior changes he has had lately, I really wanted to make sure he was OK. So... of course, surprise, surprise! Everything is psychological and he wants my son to see a psychiatrist. He will be calling me for my doctor's number to talk to him about it. I don't want him to see a psychiatrist. I want to find the cause, and fix that... not mask the symptoms. I don't understand why they can label his tics as neurological, even when they include speaking differently, but baby talk is psychological. Where are they seeing this line between the two? This does make me wonder what kind of meds would they put him on? He has sever tics, anxiety, and lately has been having baby talk and strange toddler like behavior. Does anyone here know?

Thanks.

http://webpediatrics.com/pandas.html I've read it elsewhere, or heard it elsewhere... I'm on information overload right now so I can't find it.